After a full day of crying yesterday about my situation I feel I have mourned the loss of my speech and ability to eat food as I once knew. People say you will adapt and this will become the new norm. I was having none of it. Today after crying myself a river literally I feel a different person. I am alive and will approach life with a different attitude. I have everything to live for. My son is in Romania with his friends and sent me a video of him doing karaoke off key haha and working the crowd by shaking their hands. He was singing a barry manilow song (I write the songs) I laughed so much at his confidence and attitude even though he was rather off key haha. I will approach my day with the same attitude and a smile on my face. Thanks for reading x
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❤️life is beautiful so love n spread love no matter our situation however sxxt it is ❤️ -
Hairbsb Well done! Acceptance of the situation we are in is so important. Once that’s done (and a good cry can help) you can make the most of today, tomorrow, next week…
I hope never to be described as ‘a warrior fighting a brave battle against MND’. Fighting a battle you’re going to lose is a mug’s game to my mind. Adapting, being flexible and thinking ahead seem to be good tactics to me.
Your son’s video sounds great, at just the right time. 😀Diagnosed October 2020 - See my blog at https://www.myneurodiary.comComment
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Yes raging against our disease is of course a very natural feeling, but can take so much energy that I for one haven’t got. And being able to really appreciate what we still have (like your son), is so helpful to our frame of mind. I was recently feeling grateful for the technology of this forum, how it shows in bold which threads you aren’t up to date with, etc. I know some have criticised the technology of the forum, but to a real novice it seems amazing. Well where would be without the internet in general , much more isolated. And I am really grateful to the people who post on the forum with advice from experience, support and general humanity, thanks everyone xxx
Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!Comment
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Heather R and I am grateful to you for answering my messages. Feeling part of a group is so important and to not feel alone so thank you all xxComment
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Deborah James and her attitude to life knowing bowel cancer is doing its worst. Shes an inspiration.
I know I haven't got mnd but it's TRUE we have to enjoy each day as much as we can. Take joy from what is around us. After all Putin, from what I've just read in the newspaper, is threatening us with nuclear weapons. We might not have as long as we think!
😘💕when i can think of something profound i will update this.Comment
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denise I read he has blood cancer. All the poor little animals. One has to keep positive otherwise what does one have xComment
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Onwards and upwards. We can do this. 💕😘when i can think of something profound i will update this.Comment
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Had a lovely day with my daughter and her boyfriend who are down from uni. Was worried she would be worried about my speech. Haven't told her yet of diagnosis waiting till its official. She said ah mum don't worry about that. Really cheered me up seeing her and her boyfriend is lovelyComment
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I have also had a lovely day. Gone away for the week with my husband and friend. Sun is shinning and loved being able to wear no socks and have warmth on my skin. XDiagnosed May 2021 bulbar onset als.Comment
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Hairbsb I am so glad you have managed to bounce back after such an awful day. You really are a tough lady. Like many have said here. We have to learn to adapt and find positives. Our perspective on life is what will define our time.
I had an amazing positive moment the other day... realised I will never have to take in and care for my mother in law 🤣🤣🤣Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.
Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!Comment
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shelly21 can't believe how hot it was today. It was stonking. Have a super get away. I really must book something xComment
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Hairbsb glad your feeling brighter today. It’s ok to have the odd day when feeling lousy buts it’s so nicer to try to see the good and not to dwell on the not so good.(hope that makes sense😀) Here’s wishing you all with MND and Carers lots and lots of lovely positive days. You so deserve it.(I look after my husband) xxComment
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